Claas Röhl studied communication science at the University of Vienna, after graduating from an engineering school. When his daughter was diagnosed with a rare disease called Neurofibromatosis he began to educate himself on this disease and did several educational programs on patient advocacy, patient involvement in research and fundraising. He set up the Austrian patient organization NF Kinder in Dec 2013 and in collaboration with Medical University of Vienna NF Kinder has set up Austrias first center of expertise for Neurofibromatosis in 2018. On a national level Claas Röhl is also chair of EUPATI Austria, co-chair of the umbrella organization for oncological patient organizations "Allianz der onkologischen PatientInnenorganisationen“, a member of the board of the Austrian umbrella organization for Rare Diseases "Pro Rare Austria", and he is a member of an expert advisory board for oncology at the Austrian health ministry. Claas Röhl is also involved in several international organizations, like the European umbrella organization for NF patient organizations "NF Patients United" that he chairs, the ERN GENTURIS where he serves as a member of the executive committee, or as a member of IHI’s pool of international patient experts.

Rare diseases are often complex, multi systemic disorders that are challenging to manage. Only about 5% of rare diseases have approved treatments available. Access to information, diagnosis and access to expert care is often limited. Patients and caregivers can quickly feel lost and left alone while they are often dealing with different crisis situations caused by their rare disease.

Out of these many unmet needs NF Kinder was founded in December 2013.

NF Kinder is a patient organization dedicated to improve the lives of people who are affected by Neurofibromatosis, through improving dedicated health care services in the intramural and extramural sector, and by offering services and support directly through the patient organization. NF Kinder views itself as a part of the Austrian health care system for NF patients and seeks collaborations with relevant stakeholders to fulfill their mission. In the past 9 years, NF Kinder was able to close several gaps in the NF specific health care in Austria and initiated and funded health services, psychosocial services, educational programs and research activities. Claas Röhl will talk about important milestones of his patient organization and the importance of patient involvement in healthcare.

Andy is an Associate Professor in Medical Education and Honorary Senior Academic General Practitioner at the Stoneygate Centre for Empathic Healthcare based at Leicester Medical School in the UK. The Centre’s mission is to improve patients’ lives by pioneering a robust new approach to medical education and training that positions empathy at the heart of healthcare, fostering health and care services that are fit for the future. Andy's role is to develop innovative and evidence-based teaching interventions across the medical curriculum that will increase and sustain empathy in medical students. He has wide experience in producing teaching around patient-centred care and has presented on his work internationally. Andy also works as an inclusion health GP, providing primary care services to people experiencing homelessness in Leicester.

https://le.ac.uk/people/andy-ward

Lack of empathy reduces patient satisfaction with care and is a major cause of complaints. Meanwhile, studies show that enhanced empathy reduces patient pain and increases quality of life while improving practitioner wellbeing. Therapeutic empathy involves three key features: understanding what a disease means to a patient; communicating that understanding; and acting on that shared understanding in a helpful way. Being really listened to and actually being heard is at the heart of empathic communication and its effects are truly transformative.

Systematic reviews have demonstrated that there is variation in empathy between healthcare practitioners, that empathy can be taught, and that enhanced empathy improves patient outcomes. Despite this, empathy has been shown to decline in medical students as they progress through their training. Dr Andy Ward will explain these studies and set out the transformative vision for the future of healthcare being developed at the Stoneygate Centre for Empathic Healthcare. A vision in which healthcare systems breed empathy and medical students’ empathy increases throughout medical school.

Prof Diane Levin-Zamir is National Director of the Health Promotion Department of Clalit, Israel's largest non-profit healthcare organization, is Full  Professor of Public Health at the University of Haifa, and teaches at Tel Aviv University Medical School's School of Public Health. She founded/supports the IUHPE Health Literacy Global Working Group, is the Scientific Co-Chair for the WHO-Europe Action Network for Measuring Population and Organizational Health Literacy (M-POHL), chairs the WHO European Health Literacy Technical Advisory Group for Behavioral and Cultural Insights, and chairs the Israel Health Ministry's National Health Promotion Council. Diane has published extensively articles, chapters, and co-edited books, specializing in Health Promotion action, research and policy, focusing on  primary care, hospitals and media/digital settings,  cultural appropriateness, population, organizational and digital health literacy. She serves as PI for the Israel National Health Literacy Survey, is scientific advisor for numerous international health literacy projects and is Associate Editor of the Global Health Promotion Journal.

Health literacy is now considered a strong social determinant of health and an important vehicle to empower people and organizations for health promotion on all levels. Health literacy is strongly associated with how people use preventive services, lead their lifestyle, and consume primary care and tertiary health services. As the COVID-19 pandemic approached and certainly beyond, the introduction of virtual/digital resources for health opened up new opportunities for bringing health information and resources to the public while also adding the potential risk of creating health disparities. Thus, it is incumbent upon health promoting hospitals and health services to focus attention on this significant aspect of health promotion.
Firstly, measuring general and digital health literacy through national surveys on the population level gives an understanding of what the needs are of the general population of special groups. The results of the WHO Action Network for Measuring Population and Organizational Health Literacy (M-POHL) HLS19 survey conducted in 17 countries showed us not only what the status of general and digital health literacy (DHL) is in countries, but also who are the most vulnerable among us with limited health literacy, and in what contexts. This feeds and leads directly into the area of Organizational Health Literacy, also promoted in the M-POHL network by creating and piloting tools for self-assessment and planning for action and policy among hospitals, primary care health services and health systems in general.
Finally, the consequences of all that has been learned to date regarding health literacy in all of its facets and its importance, will be explored vis-à-vis new global developments, such as CHATGPT the continued digitalization of healthcare services and other AI innovation on the horizon. Interventions for improving critical DHL literacy skills and access to digital technology, paralleled with capacity building of organizations/systems to provide trustworthy and appropriate digital resources, to accommodate people with a range of digital health skills, will be highlighted.